Registry for Patients With Erdheim-Chester Disease
| Status: | Recruiting |
|---|---|
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 10/26/2018 |
| Start Date: | October 26, 2017 |
| End Date: | October 2020 |
| Contact: | Eli Diamond, MD |
| Email: | diamone1@mskcc.org |
| Phone: | 212-610-0243 |
The investigators want to understand more about what kinds of health problems are caused by
Erdheim-Chester Disease (ECD), what happens as a result of different treatments for ECD, and
how ECD affects people's lives, their feelings and their attitudes. The investigators also
want to learn how these things change over time for people with ECD. To try to figure this
out, doctors would like to collect information about people who have ECD and how they are
treated for this disease.
Erdheim-Chester Disease (ECD), what happens as a result of different treatments for ECD, and
how ECD affects people's lives, their feelings and their attitudes. The investigators also
want to learn how these things change over time for people with ECD. To try to figure this
out, doctors would like to collect information about people who have ECD and how they are
treated for this disease.
Inclusion Criteria:
- Diagnosis of Erdheim-Chester Disease by either 1) documented histopathologic
establishing ECD or 2) documented histopathologic findings compatible with
Erdheim-Chester disease in the context of corroborating clinical and/or radiologic
findings or 3) documented radiologic findings, in the absence of a biopsy having been
performed or yielding evaluable tissue, that are felt by the Principal Investigator to
unequivocally represent an ECD diagnosis given the clinical context or 4) self
reported with supporting documentation upon medical record collection.
- Proficiency in English, in the determination of the Investigator or by self report.
- Willing to have historical and future ECD-related health records sent to Registry
review.
Exclusion Criteria:
- Patients unwilling to sign consent.
- Participants under the age of 18.
We found this trial at
1
site
New YorK, New York 10065
Principal Investigator: Eli Diamond, MD
Phone: 212-610-0243
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